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Research published today and commissioned by Birthrights shows that disabled women are generally not receiving the individualised care and support they that they need to make choices about their maternity care.

Today’s publication includes and builds on the survey research published in 2016 which found that more than a quarter of disabled women asked felt that their rights were poorly or very poorly respected. A quarter felt they were treated less favourably because of their disability, and more than half (56%) felt that health care providers did not have appropriate attitudes to disability. Some found birth rooms, postnatal wards, or their notes and scans “completely inaccessible”.

The new report published today presents data from in-depth interviews with disabled women. It highlights the need to treat disabled women – as all women – as individuals with their own specific needs. It emphasises the need to recognise that disabled women are experts in their own conditions and what they mean for their bodies and choices in childbirth. Participants described distressing scenarios of having to prove that their choices were suitable, undermining their dignity. In one very concerning case, one participant described not being given all the information she needed to make an informed decision about her care during labour, and being denied the choices she would have made as a result. Respecting women’s dignity means respecting and trusting women’s individual needs and knowledge.

Participants also described having to explain themselves repeatedly to each new care provider; at times feeling as if the focus was on their impairment rather than their needs as a person: “You’re not a pregnant woman you’re just a body. Because if I was a person to them, if I was a pregnant woman they would have read my file”. Women who had experienced continuity of carer spoke very positively of their experiences and of experiencing more dignified care.

All women had some poor experiences of postnatal care. In some cases participants did not see the point in raising issues when continuity of care was lacking and midwives were short of time; something the researchers suggest “must raise questions of safety of practice”.

Participants had mixed experiences of antenatal and parenting support: some women were provided tailored support early on but others felt that they were expected to take the lead in asking for what they wanted or found that activities or information were not offered in an accessible way.

Throughout the study, women felt that they had to be empowered, enabled, informed and supported to advocate for their rights. They emphasised the need to be listened to and treated as individuals. Not doing this has a long term impact: women who were not listened to and whose rights were not respected lost confidence and felt undermined long after the birth.

Birthrights’ Chair, Elizabeth Prochaska commented: “It is fundamentally important that disabled women – like all women – receive dignified maternity care that respects their human rights. The research published today highlights that much more work is needed by maternity services in order to provide high quality individualised care to all disabled women. This must include ensuring that all women are given all the information they require to make decisions about their care, in a way that respects their own knowledge about their bodies.”

Professor Vanora Hundley said: “The National Maternity Review, Better Births, highlighted the importance of personalised maternity care that focuses on the needs of the woman and her family. Good communication is a key to achieving woman centred care, and our findings suggest that this remains a particular challenge for women who have a disability.”

Dr Bethan Collins added: “The findings highlight the importance of communication: service providers need to both respect women’s knowledge of their own bodies while also providing the expert support to enable women to make informed decisions about their care.

“Continuity of carer was so important to many of the women, but does not seem to be common practice. As a researcher and as a disabled parent myself, I empathise with the experiences of women in our study. There is a job to do to raise awareness of disability and enable women to have a dignified experience.”

The research suggests that maternity services need to adapt to provide high quality individualised care to all disabled women. This includes improving both attitudes and knowledge of disability and disabled women among maternity professionals, ensuring all disabled women receive continuity of carer, allowing additional time for disabled women to discuss their needs, preferences and choices, auditing access and ensuring that reasonable adjustments as required under the Equality Act 2010 are made available.

The research was conducted by Jenny Hall, Jillian Ireland and Professor Vanora Hundley at Bournemouth University and Dr Bethan Collins, Senior Lecturer in Occupational Therapy at the University of Liverpool.

Research published today (15/09/16) by Bournemouth University and commissioned by Birthrights highlights how maternity care may not be meeting the needs of some pregnant disabled women.

A survey of women with physical or sensory impairment or long term health conditions highlighted how– despite most women rating the support they received from maternity health carers positively – only 19% of women thought that reasonable adjustments or accommodations had been made for them. Some found birth rooms, postnatal wards and their maternity notes and scans “completely inaccessible”,while a quarter of women reported that they felt they were treated less favourably because of their disability. Most strikingly, more than half (56%) felt that health care providers did not have appropriate attitudes to disability.

Just over half of the participants expressed dissatisfaction with one or more care providers, particularly their awareness of the impact of disability and their perception that their choices in pregnancy and birth were being reduced or overruled. One participant with a physical impairment and a long-term health condition stated, “No one understood my disability. No one knew how to help or who to send me to for support.” Another added, “I didn’t have any control or any choice. Everything was decided for me.” And one woman said, “They did not listen to me. I advised them on the unique way my body works. They did not listen to my advocates.”

Speaking in advance of the publication of her book Why Human Rights in Childbirth Matter and the Birthrights #newchapter campaign linked to the launch, Rebecca Schiller, chief executive of Birthrights said, “this interim report suggests that there are significant human rights issues at stake for disabled pregnant women in the UK and Ireland. More than a quarter of women we surveyed felt that their rights were either poorly or very poorly respected. This is unacceptable and we will be working hard to address this over the coming years.

After Birthrights’ dignity in childbirth survey (2013) we became concerned that the needs of disabled women in the system were not being met. Though it’s heartening to see how overall most women were satisfied with their care and hear some positive stories of excellent practice there is clearly progress to be made. The women surveyed asked overwhelmingly to be listened to. It is crucial to listen to and trust women to ensure the system is genuinely meeting their requirements and that they are at the heart of decisions about their maternity care. The Equality Act 2010 places a duty on the public sector to provide services that meet the diverse needs of those who use them yet participants indicated worrying lack of attention to accessibility of maternity services and facilities for women with a range of disabilities.

The survey is indicative of a wider problem around women’s rights in childbirth that can impact on all women and often most forcefully on the most vulnerable . This month Birthrights is launching a campaign for a #newchapter in pregnancy and childbirth to ensure safe, quality, respectful care is available to all women. Pregnancy and childbirth are a vulnerable time and the physical and emotional impact on women and their babies of a negative journey through pregnancy and childbirth can be severe.”

Professor Vanora Hundley of Bournemouth University added, “while this is a small survey the findings echo the recommendations of the National Maternity Review published earlier this year, which highlighted the importance of personalised, woman-centred care with continuity of carer. It is clear that these are important considerations for all women, but particularly for those women who have a disability.”

Read the full interim report here.We expected the full report to be released in January 2017 when the qualitative research is completed. With thanks to the Matrix Causes Fund for supporting this work.

Birthrights are excited to be taking part in a joint research project with Bournemouth University looking at disabled women’s experiences in maternity care. The survey below is open now (deadline extended from 3rd June). If you are a mum with a physical disability, please fill in the survey. Otherwise please share the link. The more women we can reach the better!

This is an area that we want to work more on and are planning some qualitative research with Bournemouth University in the future. The survey results will be shared widely. We will also be using them to inform our training and resources.

Three years ago this month, Birthrights burst onto the maternity scene. At our launch, we declared our intention to ensure that all women receive the dignity and respect they deserve during pregnancy and childbirth. Since then we’ve worked hard to do just that. Free, expert legal advice direct to women, respectful care training for midwives and doctors, research, campaigns and accurate, unbiased comment in the media…

Providing clear and objective information on women’s rights in childbirth has remained a priority. Our factsheets continue to be a popular resource for women and healthcare professionals. Our email advice has provided much needed assistance to hundreds of women and their families and with your help we hope to launch a telephone advice line.

We have published groundbreaking research – such as the 2013 Dignity Survey – to improve the evidence on the importance of respectful care. This year we will be focusing on the rights of vulnerable groups of pregnant women, including migrants and those with disabilities.

Birthrights reaches out to healthcare professionals through our own events, such as our Dignity Forum and Fighting the Fear study day. We speak at conferences and seminars across the country as part of our popular and expanding training programme designed to give practical tools to midwives and doctors.

We also know that it’s imperative that the maternity service is designed to understand and respect women. So we continue to work closely with maternity leaders, the Royal Colleges and offer our perspective in relevant government consultations, NICE Guidelines and the National Maternity Review.

We believe our legal expertise should be used to strengthen and uphold the protections offered to pregnant and birthing women. Working alongside the British Pregnancy Advisory Service, Birthrights intervened in a critical Court of Appeal case that questioned a woman’s legal status while pregnant and her rights to make our own decisions. We were pleased that the court upheld these rights in their judgement.

Through this work Birthrights has also been a consistent voice of reason on women’s rights in the media, with appearances on Women’s Hour, the Today Programme, major TV news, radio, broadsheet and tabloids.

It’s been a busy three years and we’re proud of what we have achieved. We have big plans going forward: expanding our training, commissioning vital research and expanding our advice service so that we can ensure that dignity in childbirth is universally understood and respected.

But we can only continue this work with your help. As we celebrate our birthday please consider making a regular monthly donation to Birthrights as we defend the dignity of pregnant and birthing women. We ask you to continue to stand beside us for years to come.

Deborah Talbot explores the relationship between birthing experiences and the transition to motherhood.

Ann Oakley wrote in her seminal work on childbirth and motherhood, Women Confined, that ‘the medicalisation of childbirth has changed the subjective experience of reproduction altogether, making dependence on others instead of dependence on self a condition of the achievement of motherhood’ (1980, p.98). For Oakley, a core part of the feminist project was control over one’s own body; childbirth, in the context of increasing medical interventions, no matter how well-meaning, was a critical moment in the social control of women’s bodies. The core question of ‘who owns my body, myself or the state’ is answered in Oakley’s work.

Yet since then there has been a resounding silence on the relationship between the feminist project, birthing and motherhood. Of course birth doulas and midwives talk about these matters, and the natural birth movement through organisations such as the National Childbirth Trust have highlighted some core concerns (albeit with their own strictures), and there has been specialised research done, but it has thus far remained on the margins of debate. Of course, rape, contraception, work and childcare are important aspects of women’s equality; although arguably the equation of work with equality – a capitalist hijacking of oppression – unravels when children arrive, and is perhaps more to do with the lack of flexible work and work/life balance for all, than the lack of childcare as successive governments have claimed. The embodiments involved with being pregnant, giving birth, being a mother, seem to sit uncomfortably and messily with recent feminist demands for equality and inclusion, precisely because it is a condition of difference and, in our work obsessed and micromanaged society, deviance.

These issues were all raised in the first seminar of a new seminar series organised by Birthrights and myself, and sponsored by Centre for Citizenship, Identity and Governance at The Open University.

Elizabeth Prochaska presented a range of perspectives around dignity in birth, including highlighting the importance of rethinking the feminist project to be inclusive of birthing and motherhood. So she argued that ‘there is a need to match up feminist discourse with women’s experiences of their bodily integrity through pregnancy and childbirth…feminism is quite uncomfortable with the concept of motherhood. It doesn’t know what to say about it or construct it in any positive way’. She cited the case in 2013 in Essex of a women who had her baby removed from her by forced caesarian section because of a breakdown; this underlies the increasing lack of control women have over their own bodies and when, in the words of an article of the Lancet (2010) ‘Women have the right to choose how and where to give birth, but they do not have the right to put their baby at risk.’

Nicky McGuinness presented research around midwives’ perspectives, touching on issues of consent and control even for the most committed midwives. Her research showed that her sample thought and cared deeply about how women were treated during labour, but that ‘there was a feeling that sometimes biased presentation and/or coercion was used to manipulate women to make certain choices that were in line with recommendations and guidelines‘. The subsequent discussion focused on the surveillance and control of women’s bodies through the dominance of risk management in the NHS, where women’s compliance is expected and delivered, and midwives use of guidelines secured, through the threat of likely harm or risk particularly to the baby. The discussion was very lively and demonstrated an appetite not just for thinking about birthing and motherhood, but how we might begin to articulate a narrative of resistance.

I will present the next seminar on the 26th February, and will be taking forward these themes by examining research I conducted in 2013 exploring the relationship between birthing experiences and the transition to motherhood.

For further information on the seminar series and to register for future events follow this link.

The National Maternity Survey obtained responses from over 23,000 women who had given birth in English NHS Trusts in February 2013. It is the only large-scale maternity survey of its kind in England. The Scottish government also conducted a similar survey last year and results are expected on 28 January. The survey matters because it informs both consumer perspectives on maternity care – the CQC ‘scores’ for individual NHS Trusts are intended to help inform women about where they might choose to have their baby – and because it sets an agenda for improvements in maternity care over the next three years.

The media focused on the fact that 25% of women reported being left alone during labour (an increase from 22% in 2010). This depressing finding reveals the impact of persistent NHS staffing shortages and adds yet more support, if it were needed, to the call for an increase in the number of midwives. What was not picked up in the media reports was the potential impact of being left alone on the outcome of women’s births. The survey found that significantly more women who reported being worried about being left alone went on to have an assisted birth or a c-section. We can conclude that being left alone contributes to poor birth outcomes, with associated mental and physical trauma for the woman. Any savings achieved by cutting the numbers of midwives are very likely to be lost in the financial consequences of bad births for the NHS.

Birthrights is particularly interested in the survey findings that related to respectful care. In common with the finding in our Dignity Survey, overall a substantial majority of women surveyed by the CQC said that they felt treated with respect and dignity (85% in the CQC survey, 82% in the Birthrights survey). However, 19% of women surveyed felt that staff did not listen to them when they raised a concern during labour. This accords with our finding that 18% of women felt that staff did not listen to them. When asked whether staff introduced themselves, 16% of women surveyed by the CQC reported that only some did and 2% that few or no staff did. Similarly, we found that 20% of women did not know the names of all the staff caring for them. These results suggest worrying failures in communication that can lead to women feeling degraded and disrespected. No doubt good communication is harder when staff are overstretched, but it ought to be possible to maintain basic standards of kindness and politeness whatever the staffing situation.

The CQC has not provided a breakdown of its results by type of birth (other than those relating to being left alone in labour). We found that women who experienced an assisted birth reported significantly poorer care than those who had a spontaneous vaginal delivery or a c-section. In particular, our findings showed that a quarter of women who had an assisted birth believed that their consent had not been sought for procedures during labour. It would be useful if the CQC were to provide results by type of birth in the future, so that maternity providers are made aware of serious issues that can arise during assisted deliveries.

When it came to choices in childbirth, the survey painted a depressing picture. As the CQC concluded, ‘Information needed to make choices was not consistently provided and the choices themselves were not universally offered to women.’ 18% of women said they were not offered any choice about where they gave birth, only 38% were offered the choice of home birth, 35% were offered the choice of a birth centre and 60% a choice between hospitals. The respondents to our Dignity Survey reported similar lack of choice – 26% said they did not have a choice about where to give birth and 21% said they were not given adequate information to make choices about their birth.

The government’s maternity policy, enshrined in ‘Maternity Matters‘, expects NHS commissioners to implement a ‘national choice guarantee’ of the full-range of places of birth – home, birth centre and hospital. The NHS Choice Framework, written for patients, entitles women to ‘self-refer’ into a midwifery service of their choice. The difference between the choices that are promised and the choices that are being delivered is stark. It is all the more depressing in light of what we know about the outcomes for women who are given choices about where they give birth. Our Dignity Survey repeatedly highlighted that women who give birth in birth centres and at home have dramatically more positive experiences that those who birth in hospital. Just one example – 45% of women who gave birth in hospital felt it had a negative effect on their self-esteem, compared with only 11% of those who gave birth in a birth centre.

The survey underscores a systemic failure to introduce real choice into maternity services that must be addressed by the Department of Health, NHS England and Monitor. If NHS Trusts are not going to provide services to meet women’s needs, private maternity providers that take advantage of the new NHS commissioning arrangements will grow to fill the gap.

Birthrights and the Open University are hosting, from January 2014, a series of six seminars on the subject of ‘Birthing and Motherhood’.

The seminars aim to bring together researchers, health professionals and all those interested in the subject to generate research agendas on the themes of the birthing experience, early motherhood, and the concept of dignity in childbirth. Each seminar will present a paper outlining new research and thinking, and participants will have an opportunity to talk through the findings and think about new directions for research.

Please contact Deborah Talbot for further information, to register interest for the purposes of catering, and if you would like to present a paper.

Yesterday’s report by the National Federation of Women’s Institute and NCT highlights key rights-based concerns facing UK women accessing maternity services. The report, which looked at the care received by 5500 women over the past five years, concluded that choice of place of birth remained “an aspiration, not a reality” and paints a picture of “fragmented” antenatal care and lack of postnatal support.

At Birthrights we are only too aware of the profound impact that denying a woman choice of where to give birth can have on her physical and mental wellbeing. When compounded by feeling “let down” by the care received, the experience of childbearing within the current UK system can be unbearable for some and lead to long-term consequences.

There are many within and without the current system working hard to promote change and to deliver care that respects women’s rights. We look forward to hearing from many of these innovators at the forthcoming Dignity in Childbirth Forum in October and are currently calling for submissions on this subject. Reports like the above serve to highlight the importance of cross-professional discussion and collaboration in this area and underline the importance of our work.

A study just published in the USA finds horrifying mistreatment of pregnant women based on misguided application of ‘pro-life’ laws.

The groundbreaking research reveals how attempts to create a separate legal entity for fetuses have led to arrests, detentions, and forced medical interventions on pregnant women.

Co-authored by Lynn Paltrow at National Advocates for Pregnant Women, an inspirational organisation fighting hard to resist the rising incursions on pregnant women’s autonomy in the name of their unborn child.

The Guardian has reported today on the UK Borders Agency refusal to stop its security contractors (the notorious G4S) using force to remove pregnant women from the UK. Pregnant women have reported being mistreated by G4S staff – including being pushed in the stomach and dragged around the floor.

The Prison Inspectorate reported on mistreatment in October and recommended that the use of force ceased.

Medical Justice, a charity investigating healthcare abuses in immigration detention, is doing great work about the treatment of pregnant women detainees.